10 Ways to Support Someone With Intracranial Hypertension

My girlfriend came home from the doctors office on a warm spring day in 2012, flopped down onto the bed and stated wearily to me, “I have intracranial hypertension (IH).” At the time, I didn’t think it was a big deal at all, but little did I realize how much of an impact it would have on her daily life and just how much it would change my own perspective on chronic pain too.

Intracranial hypertension is a rare condition affecting roughly 1 out of every 100,000 people. What causes IH  is currently unknown and there are no cures, only treatments to cope with the wide variety of symptoms. People living with IH have reported symptoms including headaches described as the “worst of their lives,” nausea, vomiting, dizziness, tinnitus, back and neck pain, sensory changes, vision changes (including strabismus and blindness), difficulty with verbal or written communication and even personality changes. IH is a buildup of cerebral spinal fluid, localized in the head and is diagnosed via a spinal tap.

When my girlfriend received her diagnosis, her doctor informed her she could no longer drive until one full year after her last dizzy spell — which if you were to ask her when that was, she would likely respond “five minutes ago,” or even, “I’m dizzy right now.” The loss of her ability to drive safely was only one of many losses to her independence she had to grieve in the months that followed. I viewed my job from then on out as the role of helping her to rediscover her independence in other ways and to offer support as she navigates the daily headache (no pun intended) of her IH.

As a part of the process of offering support, I wanted to compile a list of ways you can help if your friend, family member or significant other has IH. This is not by any means an exhaustive list, but these tips can be applied to other chronic pain conditions and can certainly be expanded upon.

10. Be patient. Sometimes people with chronic pain from IH require extra time to complete the tasks many of us take for granted each day. Grooming, dressing, chores and errands might take considerably longer for someone with chronic pain than these daily activities do for others. Being patient and allowing yourself to relax will make you a more enjoyable person to spend time with. You can even use the extra time to bond closer with your friend or loved one with IH.

9. Practice active listening. This means really paying attention when the person is speaking to you. Don’t just selectively listen or inject your own mental biases into the conversation. If the person says that he or she doesn’t have the energy for (insert activity here) it does not mean they aren’t trying hard enough, they don’t like you, or any other reason except they don’t have energy for that activity! When you listen actively, you become a more attentive ally. One way you can practice active listening skills is by acknowledging the other person’s feelings e.g. “I can see that you’re frustrated because you are having difficulty staying on your feet. Do you need any help?” And on that note…

8. Ask, but don’t assume. This advice applies to a lot of situations in life, but here specifically it means ask but don’t assume whether a person needs your help. Every person with IH will have different strengths and limitations and its wrong to assume there is a one-size-fits-all for which particular limitations you might need to help with. It’s OK to ask if someone needs your help with a specific task. It’s not OK to automatically jump in and help somebody, often while making a spectacle of being helpful. This only serves the purpose of enforcing the incorrect message that people with chronic pain are helpless while at the same time bolstering your ego onto a pedestal. Remember, ask “do you need help?” and not “oh here, let me get that!”

7. Don’t solicit advice about treatments. Some people offer unsolicited advice about various treatments in order to “help,” which is tiresome, but even worse are the others who make suggestions simply to feel superior, as if he or she alone has discovered the key to curing the person with IH. This may come as a shock to some, but those who live with IH often know more about the available treatments than you do, in fact I guarantee it. They may have tried some or even all of the treatments, or none at all. They may object to the side effects of medications or procedures. Whatever the person’s reasoning for using a treatment or lack thereof is not any of your business. I know it hurts to hear that, but it hurts more when people make assumptions about how people with IH choose to live their lives.

6. Check in. Be a support by asking your friend or loved one with IH about how they’re feeling, once or twice a day is alright (not every five minutes)! Even if the person says “I’m fine,” let them know you’re there for them. If you practice active listening (number 9), checking in will become second nature to you!

5. “I got ditched!” No, you didn’t. You might encounter that the person in your life with IH will have to cancel plans last minute, or postpone get-togethers for a number of reasons. It is important in these moments not to take things personally. They still love you. Also keep in mind that it pays to be spontaneous too! Sometimes your loved one could be having a day where their symptoms are more mild and they are better able to enjoy an event or gathering with you. Be flexible.

4. Make reasonable accommodations when requested (in some cases, it’s the law!) Take time to research the laws that are applicable to your city/town/state/country regarding accommodations for people with disabilities. Better yet, get creative with your own accommodations. You’ll be surprised how you can help.  Just be sure to ask first!

3. Educate others about IH. Learn about the “Spoon Theory,” which is applicable to some people with chronic conditions. Read up on laws and protections for people with disabilities. Break the stigma. Share this article with your friends, family, colleagues, or peers. Dispel misconceptions about IH and chronic pain. Encourage assertiveness in your loved one and intervene in negative social interactions with people who don’t understand, but make sure you ask first if its OK to engage! Some people don’t want themselves placed in situations that can escalate with hostility. Confront others only when given permission and consider safety and common sense first.

2. Take care of yourself too. The famous saying in caregiving applies here: you cannot pour from an empty cup. Take time for yourself and participate in hobbies you enjoy doing. Eat a healthy diet, stay hydrated, exercise, meditate or pray, do something creative, relax and reflect. It is so much easier to provide the care and attention someone with IH deserves if you yourself are taking care of yourself first.

The number one most important thing you can do?

1. Be loving and kind to the person in your life with IH. Remember to see your friend or loved one as a whole person and not just as their condition. He or she was the same person before their diagnosis and will continue to be the same person with it. Forgive yourself if you don’t get everything right (and no one ever does). We are all learning together. And when it comes to rare diseases, sometimes we just have to wing it!

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